University of KwaZulu-Natal, Durban

Ronald Louw Memorial Campaign: ‘Get Tested, Get Treated’

Thursday 4 May 2006

Forum Lecture: ‘Normalising Testing - Normalising AIDS’*by

Edwin CameronSupreme Court of Appeal

* I am indebted to Nathan Geffen and Marlise Richter for helpful comments but remain solely responsible for the contents.

1.I am honoured to be here and thank Prof Vasu

Reddy, of the School of Anthropology, Gender and

Historical Studies, and Ms Libby Collins, of the

Student Counselling Centre, for inviting me to be

part of this occasion.

2.Moving tributes to Ronald Louw have already been

delivered, including by Zackie Achmat and Vasu

Reddy.1 Today I don’t intend to deliver a1 Mail & Guardian 11 July 2006 (Zackie Achmat), accessible at http://www.aegis.com/news/dmg/2005/MG050701.html; ‘Dedication’ to Agendano 67, 2006 (Vasu Reddy).

tribute to Ronald, except by asking what sense we

can make of his death. Why did Ronald Louw die?

I am not speaking of physical cause. In the

sense of fleshly fallibility, we know precisely

what caused his death on Sunday 26 June 2005. He

died of AIDS. Even though he was a well-

nourished, fit, medically well-tended man,

unencumbered by Africa’s diseases of poverty,

dislocation and deprivation, he died of AIDS. He

died because his immune system, stricken by years

of infiltration and assault from a single

pathogen – the human immuno-deficiency virus –

could no longer ward off rampant cumulative

opportunistic infections that eventually

exhausted his resistance and choked away his

life.

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3.Even though his life circumstances differed

radically from those of most fellow Africans, in

his death he shared a fate that has befallen and

unhappily still portends for millions on this

continent.

4.We also know that in Ronald’s case, this outcome

was preventable. He need not have died. The

causes culminating in his death triumphed for a

precise reason. He died not because help was

unavailable, but because he accessed it too late.

He was tested for and diagnosed with HIV on 15

May 2005 – the very day that he was admitted to

hospital in Port Elizabeth with severe

symptomatic effects of late-stage AIDS, barely

seven weeks before he died.

5.AIDS is no longer a necessarily fatal condition.

It is now a medically manageable disease. In

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many millions of cases throughout the world, it

can be and is being successfully treated. Long-

term survivors of AIDS are no longer a rare and

unexplained exception – for those with access to

treatment, they are the norm: Well over 90% of

AIDS patients with access to anti-retroviral

medication recover well from their illness and

return to productive, re-energised living.

6.This Ronald knew. He knew the scientific facts

about AIDS and its aetiology, and he knew the

good news of its successful medical containment.

He was deeply actively involved in both HIV

prevention and treatment advocacy work, as

provincial treasurer for the Treatment Action

Campaign and as co-founder of the Durban Gay and

Lesbian Community Centre. He had access to ample

health insurance, and the promise of security and

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support from his friends and colleagues. Yet he

avoided the medical devices of diagnosis until

his body had already begun its final exhausted

collapse.

7.How could this well-informed, politically

conscious, sexually active, well-resourced man,

highly informed about AIDS and infection by HIV

and about his risk-exposure through same-sex

experience, have died of AIDS? Why did he not

test for HIV in good time? Why, when some years

before his death, he suffered troubling lung

ailments, that were strongly suggestive of AIDS-

related complications, did he not agree to be

tested? Why did he choose to remain undiagnosed

when timely diagnosis offered a secure path to

wellness? Why did he choose ignorance amidst the

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wealth of knowledge and knowledge-powered action

available to him?

8.Ronald Louw did not die of ignorance or poverty.

And, as a professor of law, a qualified attorney

and an astute public interest tactician, he knew

that, more than most in Africa, he would be

protected from discrimination resulting from an

AIDS or HIV diagnosis.

9.Surrounded by avenues of escape, Ronald Louw

nevertheless died from AIDS. He died not of fear

of discrimination or hostile treatment at the

hands of his peers or his colleagues, or out of

dread of others’ reactions, but because of

something more diffuse, more opaque, more

difficult to diagnose and to confront. He died

of a paralysing dread of confronting HIV that was

located not in others, but within himself.

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10. The enacted manifestation of stigma is

discrimination and ostracism. There has been

much writing and discussion and observation about

the external dimensions of stigma in the AIDS

epidemic. And there can indeed be no doubt that

well-justified fear of discrimination and

ostracism by others inhibits many people from

choosing to be tested and treated.

11. But much less has been written and said about

the internal dimension of stigma – the fear,

self-disablement, feelings of contamination,

self-rejection and self-loathing experienced by

people with HIV, and those who fear they have

HIV, even when they know that they will receive

support, protection, treatment and acceptance.

12. Ronald Louw was I believe one of these. He

died not because of external stigma, but because

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within himself there was a part that dreaded

discovering that his body harboured a famous and

famously reviled virus. That part was stronger

than his cognitive appreciation of his friends’

and colleagues’ acceptance, stronger than his

knowledge of the ready accessibility of

treatment, and ultimately stronger than his

ability to make life-saving choices for himself.

13. The most intractably puzzling part of stigma is

not the part that lies in others. It is the part

that lies within ourselves. It is more

insidious, and more destructive, than external

stigma, for it eludes the direct politically-

conscious confrontation that we reserve for

discrimination.

14. AIDS is often compared to tuberculosis, which,

before treatment for it became widely available,

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was a highly stigmatised disease. Yet the

comparisons with TB miss the point. AIDS is

stigmatised not only because – like TB – it is

associated with debilitation and death; it is

reviled even amongst those who know that it is no

longer associated with debilitation and death.

This is no doubt because, unlike TB, HIV is in

the great majority of cases sexually transmitted.

But the important point is that the revulsion and

fear is not only external: the external

enactments of stigma all too often find allies

deep within the person who has or fears infection

with HIV. This leads to the inner shame and

disentitlement that disable access to help,

support, love and care. Ronald was I believe so

disabled.

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15. In Witness to AIDS, I try to grapple with this

internal dimension of stigma, though I succeed

only in taking what Jonny Steinberg perceptively

called ‘a gentle stab’ at examining the

question.2 I speak of my own horror, in 1986, at

discovering that I had HIV. Although working at

a human rights public interest law centre at Wits

University, surrounded by rights-conscious

colleagues, so deep was my sense of self-

revulsion that I could no more contemplate

seeking their sympathy and support in the wake of

my diagnosis than if I had molested one of their

children or their domestic pets.

16. I write of how the external stigma of AIDS –

the fear of others’ all-too-real adverse

reactions – all too often finds an ally within:

2 Jonny Steinberg, ‘Why do people allow themselves to die from stigma and fear?’ Business Day, Monday, July 11 2005.

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an ally that rejects health-affirming choices in

favour of paralysed inaction, postponement,

delay, denial and death. I suggest that we fail

to understand stigma fully if we concentrate

solely on its external manifestations and causes,

and neglect the inner dimension that may be

altogether more deadly.

17. I write, also, of my Zimbabwean gardener, a

quiet gentle man, who knew of the publicly-stated

fact that I had survived AIDS because of access

to treatment, and who knew also that I would

secure access for him if he tested positive for

HIV. Despite this knowledge, my gardener, while

palpably wasting away from AIDS, repeatedly

denied that he had HIV or that he was sick with

anything more than TB, and ultimately went back

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to Zimbabwe to die what was by all accounts a

lonely and medically unattended death.

18. I tell the story in my book in self-reproach.

The point I make is that I should have been more

pro-active in ascertaining my gardener’s HIV

status; that I should not have left him to the

isolation and loneliness of his own fears. I

should have done more to insist that he be tested

and diagnosed and treated. I should through my

external actions have created a bridge for him to

cross over the perilous rapids within that were

preventing him from accessing medical diagnosis,

care and treatment.

19. This story has I think a wider point, for it is

being played out throughout our region, and its

wider point is directed at the human rights

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protections that we have erected around medical

diagnosis of HIV.

20. My book was published in early April 2005, six

weeks before Ronald’s diagnosis and his fatal

illness. I know that he read the Zimbabwean

gardener’s story. On Monday 11 April, just days

after my book appeared in the bookstores, he

wrote to me, congratulating me on its appearance

and saying how much he was enjoying reading it.

With poignant meaning, Ronald relates that he had

recently visited our mutual friend Zackie Achmat

in Cape Town – Zackie had eighteen months

previously started anti-retroviral treatment –

and writes to me that he was ‘pleased to see

[Zackie’s] progress to good health’, as what

Ronald dubbed ‘a notable survivor’: ‘I'm sure’,

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he added, ‘he will continue engaging us for years

and struggles to come’.

21. Zackie is indeed so surviving, for he is on

manifestly successful treatment. Yet Ronald did

not. At the very time he was writing to me, he

was barely a month away from himself collapsing,

at his fatally ill mother’s deathbed, with late-

stage and ultimately irreversible AIDS. Most

poignantly and significantly, when he wrote to me

on Monday 11 April 2005, his HIV infection was

still undiagnosed.

22. This eloquent, informed, rights-conscious,

duty-active, AIDS-literate man was writing to me

from a pit of isolation and ignorance and fear,

for, five weeks before his collapse and

hospitalisation, he must have sensed that the

symptoms of his fatal condition were pressing

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with mortal force on his health. He must have

known, at some level, somewhere, that he was

desperately and perhaps mortally ill. Yet he

remained unable to take constructive action to

elude the fate that so sombrely beckoned him.

23. There were in Ronald’s case powerful additional

reasons for his difficulty in confronting HIV.

Pre-eminently there was his mother’s long fatal

illness and her imminent death. He was with her

and tending her, immersed in her mortality,

unable to deal with his own.

24. Yet amidst it all, the picture inerasably

emerges of a man sophisticated in all the skills

of this brutal and debilitating epidemic, except

that of self-acceptance – and thus of self-

preserving timely action.

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25. My excursus on Ronald Louw’s mental state is

not intended as a mere deliberation on one heroic

but isolated person’s motive forces. Ronald’s

story has I believe urgent and compelling

practical significance for us today. For

Ronald’s isolation and fear are by no means

singular. From many communities, workplaces,

churches, educational institutions there are

similar reports – accounts of people who, like

Ronald, have access to medication, support, and

the assurance of acceptance and non-

discrimination – yet who are too fearful, too

tardy, to have themselves tested. These feelings

have nothing to do with race, literacy,

sophistication or book learning: they are too

deeply human to be affected by the incidental

specificities of social condition and education.

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26. All too often the fears are grounded in

external reality – and they are, regrettably,

compounded by a government whose prevention and

treatment messages are still not clear, single-

voiced and unambivalent.

27. Yet today I ask us to reflect not on the

reality of external stigma or the insufficiencies

in government’s response to the epidemic. I ask

us to reflect on something those who consider

themselves rights-conscious may find harder to

face: the question whether the human rights

protections we have helped erect around AIDS –

and in particular its medical diagnosis –

contribute to and reinforce the internal

dimension of stigma.

28. I have suggested that the history of AIDS over

the last 25 years can be seen as a struggle to

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assert the primacy of the material facts of

physiology and virology in managing it over the

damaging interposition of social conceptions of

the disease.3 If we treated AIDS purely as a

physiological manifestation of its environmental

and pathogenic causes – as we treat malaria or

bilharzia – we would treat it merely as a

‘normal’ disease.

29. One of the aspects of the struggle to normalise

it lies in the struggle to make the principles of

medical management pre-eminent in the diagnosis

and treatment of HIV. This has been represented

in the struggle for the ‘medicalisation’ of the

disease’s clinical management, as opposed to its

continued ‘exceptionalisation’. In saying this we

must acknowledge that the public health debates

3 Stellenbosch lecture Wednesday 12 October 2005, Stellenbosch Law Review, accessible at http://law.sun.ac.za/judgecameron_lecture.pdf.

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and campaigns that the epidemic sparked have lead

to considerable reconfiguration of disease and

patient management (for instance, in giving

patients more agency and autonomy, in ensuring

that patients understand their diseases and that

they meet their doctors as partners, not as

subservient recipients of care). In urging the

normalisation of AIDS, one therefore concedes

that the exceptionalisation of AIDS has

beneficially influenced what we now consider to

be ‘normal’ for all diseases.

30. But still we remain very far from treating AIDS

as just an ordinary disease. And the question I

raise is whether the continued exceptionalisation

of AIDS from the human rights point of view is

not undermining human rights. Ronald’s death

shows us that the struggle to normalise AIDS is

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not just against stigma’s external manifestation,

but against its internalisation in those who

have, or fear they have, HIV – the shame and

disentitlement and self-disabling ignominy they

all too often feel.

31. And this forces us to ask whether the medical

protocols and procedures that surround diagnosis

with HIV and treatment for AIDS reinforce the

internal manifestation of stigma and thus impede

access to treatment.

32. For 25 years, by widespread (though not

universal) consensus among public health

specialists, AIDS has been treated as

exceptional. The consensus arose mainly because

of the enormous stigma attending AIDS, and the

fact that there was no treatment for it.

Additional considerations included the long

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latency period of the virus, and the fact that it

was mostly transmitted during intimate consensual

conduct between adults in private. In addition,

although HIV is infectious, it is a weak pathogen

which is not easily transmitted. And detection

of HIV infection in its early stages is not

always easy.

33. For all these reasons, the AIDS epidemic was

treated in ways that differed signally from

previous public health emergencies. At the core

of this approach was the well-known ‘AIDS

paradox’: the recognition that protecting the

rights of those with HIV was not inimical, but

complementary, to containing the disease.

Coercive measures were recognised as not just

needlessly punitive: they put the very public

they were designed to protect at unnecessary risk

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of further infection by driving people away from

diagnosis and counselling for behaviour change.

34. But this paradox has led to a further paradox.

One of the ways in which people with HIV were

protected was by hedging diagnostic procedures in

the healthcare setting with elaborate special

measures to ensure confidentiality and knowledge

and consent.

35. Consent to HIV testing could not be general: it

had to be specific. And it could not be tacit:

it had to be express. And the momentous

implications of diagnosis had to be carefully

canvassed with the patient both before and after

the test in carefully constructed counselling

sessions.

36. These protections treated the disease as

exceptional, because it was exceptional – not

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only because of the level of stigma that

surrounded it, but because no medical treatment

was available for it.

37. But the world has changed. And the epidemic

has changed. The protections were designed for a

world in which stigma caused death, and in which

protection from its effects could often be

secured only by protecting the patient from

unnecessary HIV testing, whose only product, all

too often, was victimisation, ostracism and

discrimination.

38. They were designed for a world in which, while

the opportunistic infections associated with HIV

could be palliated, little could be done to halt

the inevitable assignment with death that

infection entailed.

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39. All that has changed. Because of the

activists’ struggle for the normalisation of AIDS

– including that of the Treatment Action Campaign

in our own country – treatment is now widely

available. Even in many desperately resource-

deprived settings, anti-retroviral treatment is

becoming more and more accessible.

40. And where treatment is available, signs

increasingly suggest that the exceptionalisation

of HIV infection in the healthcare setting may be

impeding its effective management.

41. This is because many people, offered the choice

of diagnostic procedures whose exceptional and

unusual nature is emphasised, prefer not to be

tested. When they visit a healthcare facility,

they are not simply and merely tested for HIV.

The diagnosis of the disease is treated as

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exceptional, and is hedged around with fuss and

palaver and hullabaloo, including the requirement

of express and specific consent, and the

insistence on pre-test counselling.

42. These safeguards are intended for the

protection of people with HIV; but today I

suggest that they also serve to reinforce the

inner fears and dread – the inner sense of self-

contamination – of those who suspect they may

have HIV. All too often those safeguards

accentuate the inner disavowal of entitlement to

betterment. People shy away from being tested

because the requirements relating to consent and

counselling accentuate the differentness and

distinctness and horror of AIDS. They emphasise

to the patient that this disease is exceptional,

abnormal, unusual.

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43. As a result, rather than consenting to being

tested, many shy away. They prefer to ascribe

their symptoms to causes other than HIV, when all

too often the routine administration of a test

will confirm the opposite, and will open the way

to effective management of their condition.

44. Where effective medical management of the

disease can be offered to patients, this suggests

a new and disquieting paradox: that the

exceptionalisation of HIV, designed to protect

from needless discrimination, may constitute a

barrier to diagnosis and treatment.

45. This in my view it requires us to reconsider

urgently the exceptional protections for HIV

testing in the healthcare setting and to ask

whether they should be relaxed.

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46. Undoubtedly, a patient should only very rarely

be coerced into a diagnostic procedure against

her or his will. This principle is particularly

important where the likely consequence of

diagnosis continues to be ostracism,

discrimination and isolation.

47. But where diagnosis could lead to treatment, to

the preservation of the patient’s life – and

where continued ignorance will surely hasten

death – the healthcarer’s duty of beneficence to

the patient demands that accurate, early

diagnosis of the treatable condition should be

encouraged. Where possible, diagnosis should be

a routine and uncontroversial element in the

patient management process.

48. Where treatment is available, the aim should

therefore be to make HIV testing normal, and not

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abnormal; and the exceptional procedures and

barriers surrounding it should be diminished and

if possible eliminated.

49. Within this debate lies a logical and

conceptual issue at the heart of the struggle for

the normalisation of AIDS. In what sense can we

reliably claim that the disease is special?

Nothing about AIDS – the disease itself, or the

epidemic – is intrinsically exceptional. Its

exceptional features (the extent of the pandemic;

its destructive impact; the stigma surrounding

it; the discrimination) are purely contingent,

and the exceptional responses to it accordingly

purely strategic.

50. In principle, therefore, our strategic

responses to AIDS should be aimed at normalising

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the treatment of HIV, not only socially, but more

urgently within the healthcare setting.

51. The exceptionalisation of AIDS, which was

designed to protect those with HIV, now

constitutes a source of risk and harm. The fuss

and bother that surrounds HIV testing in

healthcare settings where treatment is available

constitutes an additional source of fear and

inhibition for those with HIV and those who fear

they have it, and reinforces their own conception

of the exceptional, horrific and unacceptable

nature of the infection.

52. Ronald Louw’s story, and its repetition in

countless similar tales in this epidemic of

prejudice and ignorance and fear, illustrates the

risk. Normalisation of AIDS, and normalisation

of testing protocols around it, may well have led

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to his earlier diagnosis, since the medical

personnel attending him would have been less

inhibited about encouraging and even urging him

to take the test. If, when he sought medical

management of his lung infections some years

before his death, Ronald’s consent to testing had

been taken as implicit, the later effects of HIV

on his body could have been easily contained.

53. The meaning of Ronald Louw’s death lies in its

warning to us that where treatment is offered to

the patient, testing protocols, though designed

for protection, may be colluding with the

patient’s inner fear and denial, with all too

often fatal consequences.

54. Let me be quite clear about what I am

advocating. I am suggesting that where three

conditions exist, we should re-medicalise the

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diagnosis of HIV, by making it a normal part of

medical treatment, subject only to a patient’s

deliberate and express refusal to be tested.

Those conditions are that

anti-retroviral treatment must be available for

offer to the patient;

there must be assurance that the consequence of

diagnosis will not be discrimination and

ostracism; and

the patient must be secure in the confidentiality

of the testing procedure and its outcome.

55. Those conditions are still rare in Africa. But

where they do exist, we must move urgently to

normalise the treatment and diagnosis of AIDS.

They existed for Ronald, and had normal beneficent

medical procedures been applied in his case –

instead of the inhibited disclaimers, prohibitions

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and disincentives to HIV testing – his disease

would in all likelihood have been diagnosed

sufficiently early for his death to be avoided.

56. Let me be even clearer. I am advocating that

where treatment, non-discrimination and

confidentiality can be assured, we should even

forgo insistence on pre-diagnostic counselling. In

saying so, I acknowledge that pre-test counselling

exists not merely to satisfy human rights concerns.

There is evidence that well-structured and -

administered pre-test counselling reduces risky

sexual behaviour (whether the test subsequently

shows negative or positive).

57. Pre-test counselling (perhaps even in the form

of HIV treatment literacy workshops) is therefore

desirable and useful. There is also evidence that

post-test counselling is useful and important.

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Counselling is therefore useful provided that a

health care facility is able to offer it without

sacrificing the time and energy of its healthcare

personnel. That time is urgently required for

diagnosis and treatment of HIV.

58. But where pre- or post-test counselling drains

healthcare resources away from diagnosis and

treatment of HIV, we must now acknowledge that it

constitutes an impediment to the effective

management of the disease. We must acknowledge

that it is costing lives.

59. It is true that AIDS is a dread disease, and

that pre-test counselling assists those with it to

adjust to their condition. But malaria, cancer and

insulin-dependent diabetes are also dread,

potentially fatal, diseases – yet no testing or

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counselling protocols inhibit their diagnosis and

effective management.

60. In a mass epidemic of HIV, where mass treatment

is now be a realisable fact, pre-test counselling

may be a luxury we can no longer afford. Our

commitment to normalising AIDS must now include a

commitment to equate its medical diagnosis and

management with that of other treatable dread

conditions.

61. Had we realised this earlier, we may have

helped saved many lives, including that of Ronald

Louw. This week’s campaign – GET TESTED, GET TREATED –

is therefore our most potent tribute to Ronald: and

it asks us all – especially those of us who

consider ourselves human rights advocates – to

explore its implications without flinching.

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